Putting the Patient First

Transcription

1 Putting the Patient First Annual Report on our work with Patient Groups 2014

2 For further information please contact: GlaxoSmithKline (Ireland) Ltd., Medical Department, Stonemasons Way, Rathfarnham, Dublin 16. Tel: Fax:

3 Welcome to the 9 th edition of Putting the Patient First. Patient groups provide people with support and information on how to live with their disease and they represent patient views and campaign for change on issues that affect patients and carers lives. Some also carry out vital research into the causes and potential treatments for specific conditions. In Ireland, GlaxoSmithKline (GSK) works with a wide range of patient groups in disease areas such as asthma, COPD, cancer, and HIV. We are proud to work with these organisations to better the outcomes for their members. GSK and patient groups share a common concern, that the healthcare system should focus on treating and managing disease and that patients should have access to quality information and support for their disease. GSK s interest in patient advocacy is about supporting the voice of patients and ensuring a comprehensive healthcare debate, where all stakeholders views are brought to the fore. During 2014, we provided support of over 125,000 to the following Irish patient groups: AIDS West, the Asthma Society of Ireland, COPD Support Ireland, the Dublin AIDS Alliance, Epilepsy Ireland, the Irish Platform for Patient Organisations Science and Industry, the Irish Skin Foundation, the Marie Keating Foundation, and the Migraine Association of Ireland. We appreciate an open and transparent relationship with these organisations and respect their independence. GSK is committed to work at the highest levels of ethical standards, using five guiding principles to direct interactions with patient groups: Principle 1 The independence of patient groups, of their political judgment and of their activities, shall be assured. Principle 2 In all cooperative matters, transparency is vital. Principle 3 Any joint policies undertaken between patient groups and GlaxoSmithKline shall be based on mutual respect and trust. Principle 4 GlaxoSmithKline shall refrain from promoting its specific products and services. Principle 5 When working with patient groups, GlaxoSmithKline will always comply with local laws and governance. GSK believes that the work we do with patient groups helps us to achieve our global quest to improve the quality of human life by enabling people to do more, feel better and live longer. 3

4 AIDS WEST AIDS WEST is a voluntary organisation, part-funded by HSE West, based in Galway. AIDS WEST offers support to people affected by HIV/AIDS and to those concerned about their sexual health. The services provided include support, counselling service, information helpline and education/prevention services in counties Galway, Mayo and Roscommon. GSK has worked with AIDS WEST for over ten years. In 2014, we provided a project grant of 3,700 to support the AIDS West Newsletter (2 issues) and the printing and distribution of 200 copies of the DVD "Positive Living". Our funding represents 1.2% of the overall income of AIDS West. 4

5 The Asthma Society of Ireland The Asthma Society of Ireland is a national voluntary association of people with asthma, their parents, medical personnel and all those with an interest in the condition. The Asthma Society's vision is that the highest standard of care is provided to people in Ireland who have asthma. The Asthma Society s mission is to improve the health and wellbeing of people with asthma through advocacy, awareness, education and research. GSK has worked with the Asthma Society of Ireland for over ten years. In 2014, GSK provided the Asthma Society of Ireland with a grant of 10,000 as core funding, a project grant of 5,000 to support the 2014 Hay Fever Campaign, 20,550 to support World Spirometry Day, and a project grant of 17,500 to support the Asthma Adviceline in Further GSK provided a grant of 250 for their involvement in the 2014 Irish Medical Media Awards. GSK s funding represents 5.4% of the overall income of the Asthma Society of Ireland. 5

6 COPD Support Ireland COPD Support Ireland is a charity set up to support all those living with chronic obstructive pulmonary disease (COPD), a lung condition that makes it hard for sufferers to breathe due to obstruction of the airways in their lungs. It is Ireland s first national COPD support and advocacy body, bringing together local support groups from around the country, to help those living with, and caring for someone with, COPD. In 2014, GSK provided COPD Support Ireland with core funding of 10,000 and a project grant of 6,500 to support the 2014 National COPD Awareness Week. GSK s funding represents 17% of the overall income of COPD Support Ireland in

7 Dublin AIDS Alliance Established in 1987, Dublin AIDS Alliance (DAA) Ltd is a voluntary organisation working to improve conditions for people living with or affected by HIV and AIDS. DAA s mission is to improve conditions for people living with HIV and AIDS, their families and their caregivers, while actively promoting HIV and sexual health awareness in the general population. In 2014, GSK provided DAA with a project grant of 300 to enable additional counselling for people living with HIV. Also we supported DAA with a project grant of 21, so they can enhance the STD screening service the DAA offers. GSK s funding represents 4% of the overall income of the Dublin AIDS Alliance. 7

8 Epilepsy Ireland Epilepsy Ireland was established in 1966 by a group of individuals concerned to improve the quality of life of people with epilepsy in Ireland. Epilepsy Ireland is committed to working for, and to meeting the needs of everyone with epilepsy in Ireland and their families and carers. Epilepsy Ireland provides a range of services from headquarters in Dublin and from regional offices in Cork, Dundalk, Galway, Kerry, Kilkenny, Letterkenny, Limerick, Sligo and Tullamore. In 2014, GSK provided Epilepsy Ireland with a project grant of 5,000 to support their annual national conference. GSK s funding represents 0.33% of the overall income of Epilepsy Ireland. 8

9 The Irish Platform for Patients Organisations, Science and Industry The Irish Platform for Patients' Organisations, Science and Industry (IPPOSI) is an Irish patient-led partnership between patients organisations, industry and academic science. IPPOSI provides a platform for the dissemination of relevant information, particularly of a legal, regulatory and legislative nature, relating to the development of therapies, diagnostics and devices for serious illnesses. IPPOSI s primary mission is to establish a strong Irish alliance of patients' organisations, academic science, including clinicians, and industry jointly working on healthcare policies towards treatment and prevention of serious diseases. We have worked with IPPOSI for ten years and hold a position on the board of the organisation. In 2014, we provided a core funding grant of 7,500 for industry membership of the organisation and 250 for IPPOSI s involvement in the 2014 Irish Medical Media Awards. ly, we supported IPPOSI through a project grant of 4,000 to enable them to receive legal assistance to update Articles of Association Our funding represents 5.7% of IPPOSI s overall income. 9

10 Irish Skin Foundation The Irish Skin Foundation s mission is to support in all ways possible, to advocate on behalf of, to educate all involved with, and to bring comfort to those affected by skin disease in Ireland, their families and their carers. They are a relatively new organisation, publicly launched in 2013 with the purpose of assisting patients with all forms of skin disease in Ireland. This is somewhat unique as most organisations concentrate on just one skin condition, such as eczema or psoriasis, whereas the Irish Skin Foundation provides information and assistance to all patients with a dermatological complaint who require their help. GSK has worked with the Irish Skin Foundation for the past two years, in 2014 providing a project grant of 10,000 to support their second Family Fun Day in Barretstown for children with skin conditions an eagerly anticipated and positively received event in the calendar of the Irish Skin Foundation. Our funding represents 2.9% of the Irish Skin Foundation s overall income. 10

11 The Marie Keating Foundation The Marie Keating Foundation was established following the untimely death of Marie from breast cancer. The Foundation is a national charity and operates on the basis of building a future free from the fear of cancer by making cancer less frightening by enlightening. The Foundation provides vital health information and support services to both men and women from all over Ireland. It s three Mobile Information Units and nursing staff service the country and give practical advice around cancer prevention and early detection to thousands of people every year. Other services include a National Comfort Fund, Hospital Oncology Waiting Room Refurbishment Programme and a widely utilised Schools Programme. The Foundation s services are provided entirely free of charge. GSK has worked with the Marie Keating Foundation for nine years. In 2014, we supported the Foundation s 'Survive & Thrive' Course with a project grant of 2,000. Our funding represented 0.18% of the overall income of The Marie Keating Foundation. 11

12 The Migraine Association of Ireland The Migraine Association of Ireland (MAI) is dedicated to improving the quality of life for the 12-15% of our population who suffer from migraine. MAI provides information, support and reassurance to migraine sufferers and those with other headache disorders. Information is also on offer to the families and friends of migraineurs and to medical professionals. MAI also supports research into the condition and aims to seek out improved treatments for people with migraine. We have worked with the Migraine Association of Ireland for ten years. In 2014, we provided a project grant of 1,500 to support their educational events. Our funding represents 0.7% of the overall income of the Migraine Association of Ireland. 12